I have an appointment at UCLH soon following 5 years+ of debilitating and life-changing pelvic and penile symptoms. I look forward to seeing if and how they can improve things for me.
I've already had 'normal' MRIs and ultrasounds, which didn't find anything (my GP therefore thinks that's concrete evidence nothing's wrong, but that's another debate...).
Thinking ahead, I'm prepared to pay privately for an advanced MRI scan of the pelvic region if UCLH don't offer me one, so I wondered if anyone could suggest some places to enquire?
I've already contacted the Institute of Sport Exercise and Health, who can do a 2-part 3T MRI pudendal nerve scan for about £1500. I await a reply from UME Diagnostics, who I only recently emailed. I'm aware of London Neurography but there's no UK phone number on their website and email contact seems to require a physician's contact details (I shall enquire with them and just put my GP's details in). I was also informed about somewhere in Cardiff, but can't find their details.
If anyone can offer any advice regarding having these scans in the UK, I'd be grateful.
Briefly, I've never heard of one in Cardif. Only 2 in London, one of which is a private Hospital and one an NHS one. If this is what is known as a stand up type( although I gather one can sit down).
There maybe one in Leeds, but I could well be mistaken on that.
There was a topic on this ? type of MRI on another pain support site some months ago.
I don’t know the answer to your question,. I did not visit either hospital. But if you look online for awhile, you should be able to find it.And as far as I remember you can fill a form in online. But we are talking 6 years ago here.
Thanks for the info. Yes, I've found a couple of places in London.
I'm not clued up on the advantages of each type of MRI, and I'm sure it's been discussed many times on other posts. All I know is that I've had a routine MRI already and, whether it wasn't interpreted well or whether it wasn't detailed enough I don't know, but the report didn't find a problem. The symptoms and the way things feel are so wrong (and I'm not being overly sensitive at all) that there has to be something going on.
My aim really is to get a more detailed scan done now.
From what I have read on another pain support site. And other bits on web, It is only the MRN scan that has any chance of showing up nerves, such as I would hope the pudendal nerve. I too would consider paying £1000. I think it may be quite a bit more than this. Any way as far as I'm aware MRI scans do not pick up nerves.
Hi there... I never get doctors who say the evidence is concrete so therefore nothing's wrong. Their training is so bad.
Anyway, try the Cobolt Imaging Centre, Cheltenham. They have a Tesla 3 T3 Scanner and don't charge anywhere near £1,000. I think they're a funded trust. They are really helpful. I spoke to one of the people who runs the machine and she answered all my questions. You do have to be referred to them by your doc though.
Yes, thanks very much, I appreciate that. I'll contact them.
Getting a referral from my GP won't be possible, but if the Dr at UCLH won't offer me a scan there, I'll ask him or her to refer me somewhere like cobalt health.
Hi, I have been in much the same boat with pain for 2 and a half years. VERY miserable (to say the least) I have been to Cobalt several times and very much recommend them. Yes, you do need a referral, BUT if you have a 'head in the sand' GP (and there are many!) you could go two other routes: one is to go and see a private GP (they would rarely refuse) or you could avail yourself of the 'One-Stop' clinic at Cobalt itself. It means seeing their Consultant there. I don't know how much that is, and he unlikely to klnow anything about Pudendal Nerve pain (few, if any, do) or the like, but it's the scan you are after isn't it. Re your GP's comment about scans providing 'concrete' evidence, that is an amazingly ignorant statement to make. There are lots of things scans (of any sort) will not show. Any serious Health Professional will confirm that. That has certainly been the case in my situation. Pain is there as ever, but nothing shows on scans. Have you seen a Physio specialising in this area? So far, she's the only one who could find the exact offending deep pelvic muscle which is strangling other nerves. You would never see this on a scan.
There's a place called Vista Diagnostics in London (Waterloo) that has similar prices. There's is a 3T scanner. However, the pelvic MRI is not specifically of the pudendal nerves.
The symptoms could be referred pain from the lower spine. Have you heard of thoracic lumbar or Maigne syndrome ? It is one of the conditions that is often overlooked and MRI's etc are usually normal.
It takes a lot of time and effort to produce reliable, evidence based information as it means doing literature searches and assessing the published articles for inclusion/exclusion. Each page on our website takes a few months to develop and review and we don't have the resources to do this for everything. A few years ago there was a good article explaining the condition. I think it was written by Dr Maigne ( junior ) but not sure I would be able to find it now.
Hello Judy, thank you for your reply. Yes, I totally appreciate that researching and publishing evidence based treatments takes a huge amount of time. I will try and research/find it again. Your time and indeed this site, is hugely appreciated by many of us who have hit nothing but brick-walls in search for pain relief and who have no-where else to go.
Thank you everyone for your input here" glad i was able to help Socirul. Judy it sounds really interesting article. If you find it anniecll it would be great if you could share. I saw Dr Greenslade in Bristol 2 weeks ago who last year said Pudendal now reckons it could be piriformis and sciatic nerve problems. Had this pain for 5 years. On 1800 Gabapentin. No help atall but terrified to come of.
Hi, With regard to Judy's suggestion to look at Maigne Syndrome, here is the URL regarding this report about 'THORACOLUMBAR JUNCTION SYNDROME, A SOURCE OF DIAGNOSTIC ERROR' written by R Maigne: eikon.serveftp.net/viewPage...
Good job ! This isn't the article I was thinking of but it gives an idea and the following sentences are important: " The pain felt by the patient may be suggestive of intestinal, urological, testicular, and above all gynaecological disorders.... Refractory pain of this kind will lead to numerous investigations, which may involve high-tech equipment. If anything at all is found during these investigations, surgery may be performed; however, - especially in the case of gynaecological operations - this surgery will be to no avail"
The skill is knowing when and when not to operate and a major reason for the need for an interdisciplinary approach.
Sorry it isn't the article you thought of, but, as you say, it explains what COULD be causing pain. To me, the skill is trying to find someone who will listen and even vaguely CONSIDER that your pain may be caused by something outside their own discipline and that newer research may be well worth following up. Todate, when I have dared suggest somethingm backed up by credible documentation, I have been dismissed out of hand. So, you have no choice but to do your own research and the onus as to wether you go with one or other surgery is entirely on you.
Another scenario in relation to someone with THORACOLUMBAR JUNCTION SYNDROME: they could well have a genuine internal pelvic issue that is undetected by scans but is being amplified by the TJS. They could also be holding themselves awkwardly because of the amplified pelvic problem, thereby exacerbating the TJS which, in turn, makes the pelvic issue seem worse...and so on. Therefore the problem is kind of self-sustaining. The perfect example of the body conspiring against itself!
Also, doctors generally don't like you doing your own research, or at least they don't like you suggesting something they haven't yet considered. This seems to be the ultimate infringement on their egos. I've come to learn how this attitude arises as a product of several factors, including (but not limited to): the sort of person that succeeds in becoming a doctor (class, upbringing, education etc.); the intense training they undergo for over half a decade (including how to 'deal' with patients); the way society as a whole reveres doctors making them feel even greater still; the 'thick skin' they develop over the years due to the pressure of the job; dealing with some patients who genuinely are 'hypochondriacs'.
Of course there are many great doctors who are open to proper dialogue with their patients, but I'm not wasting my emotional energy on doctors who have in the past disregarded my ideas in the same way you describe. Surviving my condition requires me to conserve as much of this energy as possible.
Unfortunately (and I wish I could say the opposite'!) I completely agree with your view of the medical profession - based on my own experiences. I have in the past made 'tentative' suggestions as to the cause of my pain and the reaction has, almost without fail, been either patronising or hostile. They are simply not programmed to accept that their assessment of your problem is open to question. They feel perfectly justified in performing a variety of surgeries (depending on their chosen specialist field) and when it doesn't have the desired effect, or the complete opposite, they can shrug their shoulders and simply refer you on to the next guy. This has happened to a number of sufferers of this type of pain. Usually, it's a Laparoscopic surgical investigation or some kind kind prolapse surgery they will suggest - simply because it's what the specialist one is seeing at the time does. Nearly all procedures are extremely invasive, often cause more nerve damage or have no effect on the problem at all. I have had lumbar spinal surgery because the surgeon felt sure that that was the cause of my pain. It was not!! I now have additional nerve pain to add to the original one.
Like you, I am preserving my energy, which is hard-come-by these days, to continue to research and seek other treatments that seem entirely logical. I know everyone is different, but I don't believe that my pain is caused merely by a trapped pudendal nerve or similar. Even if that is the case, I have yet to come across any medical professional seeking to find the CAUSE of the nerve entrapment! (I can see that this may be the case with someone who has had pelvic surgery of some kind, but I have not). I therefore believe that it is quite possibly the result of some kind of chain reaction to a long-standing structural imbalance. With this in mind, I will now be seeing a 'Biomechanics' practitioner to try and realign my bodies structure. Who knows... as the conventional medical profession (other than a specialist PT) has little, if anything, to offer me, I can but try.
Sadly I have to agree with you all. I have had prolapse surgery on bowel has left me with severe nerve pain. Yes, the surgeon who performed the op wasn't interested at all when i returned in accute pain. 5 years later I've had to do my own research and suggest to my doctor who I should see. She also suggested i should see them privately because the NHS wouldn't see me, although I was in chronic pain. 3 consultants later, my doc told me there is nothing she can do but give me drugs. That's all she's trained in and proceeded to offer me an antedepressent on top of the cocktail of stuff I'm on. I think doctor's have their place and we have to decide when and how to use them in our management pack. It's like 'swimming through oil' trying to work our way through the medical system. Very sad state of affairs. Good to read all your thoughts. And the article was very interesting . TJS seems to fit my issues like a glove. I guess it's all about management.
Hi there Allthatjazz123 I'm wondering if you managed to cure you're pain and if you dared to come off Gabapentin. I am in the very same boat wondering if its pudendal, piriformis, or sciatic. I am also on Gabapentin. I recently tried tapering off it, and too quick at that. Now my leg, hip, buttock, heel pain is back even though I updosed back to my original dose. I went from 900 to 300, and back to 900mg. It would be great to hear back. Thanks.
Hi socirul, our hospital in Newcastle upon tyne has a T3 scanner,but did you know New York uni hospital has a Tesla 7, yes T7,its for research,but I read that they can do reverals,,I feel your pain,
I started with what I think are pudendal nerve problems in early October.
I have seen 4 consultants and had 2 MRIs of pelvis and one of lumbar and sacrum.
I am told the the pudendal nerve 'looks fine' but I, like you, thought you needed an MRN and not an MRI to see this. You can't see what's going on in Alcock's canal for instance.
PLEASE let me know if you have found anywhete that does give an MRN.
I filled in the form on the link I sent you (I just gave my GPs details) and was emailed back from someone in California as the company is American. She gave me some basic info and also a contact number (American) to check availability.
I'm doing better, thanks for asking. I've not really had any treatment or scans that revealed anything. I've invested in a TENS machine which has been by far the most helpful thing I've tried. I commented on this in the following thread: healthunlocked.com/pelvicpa...
I've also developed some stretches that help.
There are other options than MRN by the way. There are experts who do a high-definition MRI of various parts of the pelvic, notably in the USA, France and Austria.
Find this site hard to use. Don't know if I've sent a reply or not.
I said that I was glad you were feeing better.
My pain is in the backside, a deep throbbing and damn near constant.
Toes/feet seem sore as well.
Wondered what waiting time was like for London Neurography and also how useful report was with conventional docs. They seem to be very ignorant of pudendal neuralgia.
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